Ryan had always been such a happy and healthy baby but when he turned 18 months old, everything changed – he became restless and lethargic, and just wasn't himself. He lost interest in food and started to lose weight.

After a series of viruses, our doctor referred him to hospital where they carried out tests. When we were called into a private room for a talk, I knew it was going to be bad. "Right, we've got news about Ryan. He's got an illness called cystic fibrosis," we were told by a consultant. Eventually, they said, his organs would pack up and he would need transplants including lungs, liver and kidneys; the hospital would become his second home because he would be in and out so often. They explained that he wouldn't be able to have any children and that he'd almost certainly die before us. This was my only son they were talking about.

I was stunned and then I just screamed and cried. I asked to phone my mother who was looking after our two daughters, then seven and 14 years old. They told us to go home, be a family for the weekend, but bring Ryan back on Monday morning for admission. All weekend I held on to him – I couldn't really believe what was happening.

For two months Ryan had a temporary tube into his nose and he'd go to the hospital at night to be feed through it because he was still losing weight. Three days after his second birthday he had an operation to insert a peg into his stomach to feed him through a tube, which was very distressing to witness. Ryan would kick and scream, and we had to try to comfort him. We plodded along for weeks in this medicalised nightmare – a series of check-ups, hospital stays and more medication to help him fight infections and digest his food.

Of course we didn't question the diagnosis at that point; why would we? You listen to everything the professionals tell you, there was no reason not to. I could see Ryan was ill and believed this was the only treatment that could help. I would spend my time thinking, "Is he going to die? When is he going to die?"

My husband took it all very badly. He thought it was his fault but I'd tell him, "Don't be silly. If anything, it's the two of us combined." We had been told both parents have to carry the gene.

Inevitably we wrapped Ryan in cotton wool. We were so protective of him because we didn't know how long we'd have him. While other boys were out kicking a ball about, Ryan was hooked up to a feeding machine.

Then, in 2005 – three years after Ryan's original diagnosis – came the next bombshell. The hospital told us they were unable to find the gene for cystic fibrosis. Even so, they still had to continue with Ryan's treatment, until they could confirm he didn't have it. We felt such mixed emotions – relief because Ryan may not have this terrible condition but anger, too. They said they wanted to send him to another hospital in Liverpool for further testing to find out for sure if he was clear or not. Whenever we asked why it was taking so long, they told us it was funding. We couldn't afford to go private, so we had no choice but to wait.

Finally, in late 2009, he was seen at Alder Hey where we were told he didn't have it; in January this year it was confirmed. The doctor told us, "I don't even know why Ryan is here – I've read up on everything and he definitely doesn't have cystic fibrosis." Even though there was happiness and more relief, there's still anger, too. It was like another trauma to deal with. All those years wasted and all that treatment for nothing. No one can say for sure what was wrong with Ryan – the peg finally came out of his stomach in April but he's still frail and gets ill. Now they say he has a behavioural eating disorder. If that's what he has, could it have been caused by hearing he was going to die and being fed through his stomach for all those years?

We're trying to focus on quantity and quality of life for Ryan. As soon as we had the all-clear, we talked for the first time about the things he can do when he grows up. We joke with him that he'll grow tall and tower over his mother one day. He says he wants to stay on at school and study like his sister; at last we can all see a future.